Where There’s a Will, There’s a Way
The Will Herndon Research Fund at Beyond Batten Disease Foundation
Our goal is to SAVE WILL and the hundreds of other children stricken with juvenile Batten disease. We have HOPE, but we need your help today!
In 2009, Missy and Wayne Herndon founded The Will Herndon Research Fund (HOPE) to raise awareness and support for research into finding a cure for juvenile Batten disease.
This effort began in honor of their son, Will, who was diagnosed at the age of 6. This rare, fatal, genetic disease attacks an otherwise healthy child, beginning with vision loss, declined cognitive skills and seizures. Imagine blindness, Alzheimer’s and Parkinson’s diseases all rolled into one. Batten disease has proven to be fatal, often by the late teens or early twenties.
When the Herndon’s journey began, virtually no viable research existed. They partnered with Beyond Batten Disease Foundation in Austin, Texas, and brought a team of researchers from Italy to the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital, to focus on a treatment for juvenile Batten disease. Initially funded with a $2.5 million grant, it represented the largest investment ever made in the history of Batten disease research. After numerous experiments and diligent analysis, this team presented the Batten community with a significant medical breakthrough – a treatment that slows the progression of juvenile Batten disease. At this very moment, it is undergoing FDA-required validation studies, with a goal of being approved into a clinical trial.
These studies are expected to last until late 2017 and projected to cost $3 million. Securing funding for this this project and successfully entering clinical trials, would mean that Will and the many children who need it most, would receive that treatment! And, HOPE researchers would gain valuable, much needed time to focus on finding a cure.
In the years sine Will’s diagnosis, Missy and Wayne have never been filled with more HOPE than they are now. They are in an intense race against time, relying on the prayers and support of family, friends and a generous corporate community. Thank you for visiting The Will Herndon Research Fund. Please continue to explore this page and see the many faces of HOPE at fundraising events that occur year-round.
Join our HOPE family and stay up to date on all activities by adding your email address in the box below.
I often ask myself, “What will my future be like?” In some ways, I wish I could know. In some ways, I know it will be marvelous to watch the mystery unfold.
One thing I plan to work hard for is learning braille, for I really do HOPE to be able to read. It would be so great if I could read about my favorite animals all by myself. Therefore, I plan to work really hard with Mrs. Otto to make this dream come true.
Another HOPE and dream I have is this: I want to have my own guide dog. I can see me now, walking to the dog park. My parents would be so proud of me when I become more independent. They will say to me, “Look at you, doing all these things by yourself,” and then I’ll know I’ve reached my goal.
Three is always a lucky number, and so I save my most important dream for last. I truly HOPE and HOPE that I can work with animals. This is my most cherished dream. I would like to be a zoo keeper. I would like to train animals. I would like to rescue animals in need.
“We are the stuff dreams are made of.” I know this is true. By my dreams, you know me. Wish me well, my family. I begin my future now.
Going the extra mile…
Will’s Warriors for HOPE are a group of passionate and caring individuals who turn the everyday into extraordinary. Whatever you do – you can do with the added benefit of helping Will and the many other children afflicted with juvenile Batten disease.
Are you an avid runner, bicyclist or swimmer? The next time you enter a competition; do so with Will in mind. Are you planning a birthday or anniversary celebration? Have your friends or family make a donation in honor of the special occasion! Having a neighborhood pot luck? Ask your guests to make a contribution for Will in addition to bringing their dish. Do you plan hostess parties? Considering having one especially for Will and donate your profits to his cause.
Whatever the reason, become a Warrior for Will and watch your effort easily multiply while helping the Will Herndon Fund reach a wider audience and move closer to our goal of eradicating Batten Disease.
Whatever your function, you can support Will in two ways:
- Create a fundraising page and invite guests to contribute online with a credit card.
- Collect donations at your gathering and submit a check to HOPE or make an online donation with a credit card.
- If submitting a check, please mail to:
The Will Herndon Fund
PO Box 132646
Spring, TX 77393
- To make an online donation with a credit card:
Click Here »
- If submitting a check, please mail to:
Support a Warrior
HOPE Summer Art Camps
Sessions offered in June and July at Young Artist’s Art Studio.
More info »
HOPE Under the Stars 2017
Saturday, September 9, 6:00pm – 12:30 am
Join us for the 9th Annual HOPE Under the Stars at The Woodlands Waterway Marriott Hotel & Convention Center. Sponsorships and tickets available online now.
More info »
Friday, November 3 at Nordstrom – The Woodlands
Join us for an afternoon of high-fashion as we host our first Runway HOPE at Nordstrom.
HOPE on the Green 2018
Monday, April 9th at The Woodlands Country Club Palmer Course